Poll Finds Wide Gap Between the Care Patients Want and Receive at End of Life Few older Californians discuss treatment preferences with their doctors
Poll Finds Wide Gap Between the Care Patients Want and Receive at End of Life
Few older Californians discuss treatment preferences with their doctors
(Oakland, CA) – When it comes to how they want to spend their final days, Californians prefer to die a natural death at home without being a burden, financially or emotionally, on their families. Yet according to a new poll released today by the California HealthCare Foundation, a disparity exists between what people say they want at the end of life and what actually occurs.
The survey, Final Chapter: Californians’ Attitudes and Experiences with Death and Dying, finds nearly 8 in 10 Californians said that if they were seriously ill, they would want to speak with their doctor about end-of-life care, but fewer than 1 in 10 report having had a conversation, including just 13% of those age 65 or older.
Additionally, while 82% say that it is important to put their wishes in writing, less than one quarter have actually done so. More than half say they have not talked with a loved one about the kind of care they want at the end of life.
The survey explores differences in attitudes toward death and dying among major ethnic groups in California. Top concerns vary. For example, Latinos rate “living as long as possible” much more highly than other groups.
”With end-of-life treatment, there is a clear gap between wishes and actions,” said Mark D. Smith, MD, MBA, president and CEO of the California HealthCare Foundation, which commissioned the survey. “People consistently stress they want to die comfortably and without pain. If so, the single most important thing they can do is to talk to their loved ones and physician, and put their wishes in writing, something most Californians aren’t doing.”
Preferences Not Being Followed
The survey finds patients’ wishes regarding treatment are not always honored. Only 44% of Californians who have lost a loved one in the last 12 months say their loved one’s end-of-life preferences were completely followed and honored by their medical providers. These numbers drop to 26% for those whose loved ones experienced a language barrier and 25% for patients who were uninsured at the time of death.
Similarly, most Californians would prefer to die at home, but that is not typical. Seventy percent of those surveyed said their home is their preferred place of death, but only 32% passed away in their homes, according to death records from the California Department of Public Health.
Paying for the Conversation
A major barrier to effective end-of-life planning is the lack of frank discussion between patients and health care providers. The average 15-minute office visit does not leave time to explore the natural progression of illness and the preferred treatment options for those nearing death.
As part of its original package to expand health coverage, the Obama Administration proposed requiring public and private insurance to cover voluntary conversations about end-of-life planning between patients and providers. After the issue became politicized, the idea was dropped from the final bill.
The new poll finds broad support among Californians, regardless of political affiliation, for reimbursing doctors to talk about end-of-life options. Eighty-four percent of Democrats, 72% of Republicans, and 80% of Independents say it would be a good idea to pay for the conversation.
Putting a Plan in Place
To help patients have their say if they are unable to speak, CHCF promotes the use of Physician Orders for Life-Sustaining Treatment (POLST). Developed in Oregon two decades ago, POLST is a standardized medical order form (in California it is printed on bright pink paper) that indicates the specific types of treatment a seriously ill patient does or does not want. The voluntary form is signed by the doctor and the patient and is designed to travel with a patient across medical settings.
POLST complements, but does not replace, an Advance Health Care Directive. An Advance Directive, which should be filled out by any adult regardless of one’s health status, provides a broad outline of a person’s wishes relating to end-of-life care, and allows an individual to appoint a “health care proxy” – the person they want to speak on their behalf. Only POLST, however, carries the power of a physician order.
According to the survey, nearly two-thirds of Californians said they would want to complete a POLST form if they became seriously ill, including 77% of those who are 65 or older. Seventy-one percent said they would want a seriously-ill loved one to complete the form so they would understand their wishes.
The State of Palliative Care
In 2009 nearly 100,000 Californians with serious illness died in hospitals, according to public health records. Palliative care treats pain and other symptoms, provides psychosocial and spiritual support, and ensures that medical treatments align with patient and family wishes. Increasingly, hospitals are recognizing the enormous value of palliative care to patients who are seriously ill.
CHCF is releasing an accompanying report on palliative care: When Compassion Is the Cure: Progress and Promise in Hospital-Based Palliative Care. Produced by the National Health Foundation and the University of California, San Francisco Palliative Care Program, it profiles the state of palliative care in California’s acute care hospitals.
Among the findings:
• Palliative care consultation services have experienced a great deal of growth in recent years: Between 2007 and 2011, pediatric services increased by 128%, while adult services increased by 24%.
• Most palliative care services have modest budgets, with 60% operating on less than $300,000 annually.
• Every major metropolitan area in California except Los Angeles increased the number of hospital-based palliative care programs between 2007 and 2011. The percentage of Los Angeles hospitals with such programs actually decreased.
Additional resources, including a consumer guide for developing an Advance Directive from the American Bar Association, and videos of individuals and family members reflecting on their experiences with these issues, can be found at www.chcf.org/endoflifecare.
About Final Chapter: Californians’ Attitudes and Experiences with Death and Dying
On behalf of CHCF, the survey was conducted by Lake Research Partners in late 2011 among a representative sample of 1,669 Californians age 18 and older, including 393 respondents who have lost a loved one in the past 12 months. The margin of error is 2.4 percentage points for the total results.
About When Compassion Is the Cure: Progress and Promise in Hospital-Based Palliative Care
This survey was developed by the Palliative Care Program at the University of California, San Francisco and administered by the National Health Foundation in the fall of 2011. All 377 acute care hospitals in California were asked to participate. Ninety-six percent responded, and 71% of respondents provided detailed information about their palliative care programs.
About the California HealthCare Foundation
The California HealthCare Foundation works as a catalyst to fulfill the promise of better health care for all Californians. It supports ideas and innovations that improve quality, increase efficiency, and lower the costs of care. For more information visit www.chcf.org.
About the Coalition for Compassionate Care of California
The Coalition for Compassionate Care of California is a statewide partnership of nearly 200 regional and statewide organizations dedicated to the advancement of palliative medicine and end-of-life care in California. For more information visit www.CoalitionCCC.org.
Steven Birenbaum, California HealthCare Foundation
Annette Majerowicz, Behr Communications
I am honored to be interviewing Terry Kaldhusdal and Mike Bernhagen about the new film, Consider the Conversation – A must see for all of us on April 6 at 2PM PST, 4PM CST on www.blogtalkradio.com
This is a “must-see” documentary about the important conversations in life. I am honored to be interviewing Terry Kaldhusdal and Mike Bernhagen about this remarkable film. April 6 at 2PM PST, 4PM CST on www.blogtalkradio.com
About the movie:
Motivated by their personal experiences with loss, two long-time friends – one a hospice educator in rural southern Wisconsin, Mike Bernhagen, and the other a former State Teacher of the Year, Terry Kaldhusdal – decided to join forces in early 2009 to begin a creative journey that has resulted in a film entitled Consider the Conversation: A Documentary on a Taboo Subject.
This project sheds light on the 21st century American struggle with communication and preparation at the end-of-life. It examines multiple perspectives on end-of-life care and includes interviews with patients, family members, doctors, nurses, clergy, social workers, and national experts from around the country. While in production, Mike and Terry donated more than 3,500 hours to the effort which included shooting 70 hours of film and conducting in-depth interviews with 40+ individuals from California, Illinois, Indiana, New Hampshire, Massachusetts, New York, Vermont and Wisconsin. 62 “person on the street” interviews were also conducted in New York City in April of 2010.
The bottom line is that Consider the Conversation does not seek to hand down answers. Instead, it provides something far more important – the questions all of us need to contemplate. That being said, the producers have three goals for this film: 1) to change the current American attitude from one that predominantly views end-of-life as a failed medical event to one that sees it as a normal process rich in opportunity for human development, 2) to inspire dialogue between patient and doctor, husband and wife, parent and child, minister and parishioner, and 3) to encourage medical professionals, healthcare organizations and faith leaders to take the lead in counseling others.
Consider the Conversation was released on DVD via Amazon.com on March 1st and will air on several PBS stations later this year.
“With simplicity and grace, Consider the Conversation leads us to confront, on numerous levels, one of the characteristics common to us all: our mortality. This film is a wonderful catalyst for all of us to engage ourselves and our loved ones in this all-important, but oft-neglected, conversation,” said Nathan A. Kottkamp, Chairman of the upcoming National Healthcare Decisions Day.
This is Terry Kaldhusdal’s fifth documentary film. His previous work includes Thinking Like a Historian, for the Wisconsin State Historical Society, and America’s Kings and Queens, The Gilded Age in Middle America, winner of the Wisconsin Historical Society’s 2010 Public Programs Award. The Milwaukee Journal Sentinel has written that Kaldhusdal’s work is “clear and concise” and added that he has a “passion for learning and a talent for communicating.” Columnist Laurel Walker has called his work “A-plus” and stated that he has “a knack for documenting history.”
In 1991, Terry joined his wife as a classroom teacher and moved from Southern California to Wisconsin. He currently teaches fourth grade at Magee Elementary School in Genesee Depot. He and his students have created documentaries that include the history of the Kettle Moraine School District and personal digital stories on everything from responsibility to the three branches of government. In 2009, one of Terry’s students was featured at the AHA Film Festival in Southern Illinois.
Terry has traveled across his state and across the country as a speaker to improve our
educational system. He was honored in 2006 with the Kohl Fellowship Award and in 2007 as the Wisconsin State Teacher of the Year. Terry resides in Oconomowoc, Wisconsin with his wife, Janet, and their three children.
Mike Bernhagen is well-acquainted with the American medical system. From 1994 to 2003, he worked in business development with one of the Midwest’s largest integrated healthcare delivery systems and multi-specialty group practices. During this decade, his time and energy were spent focusing on things like “physician incentive compensation plans”, “revenue growth”, “patient acquisition”, and “referral relationship development”. Those priorities changed in late 2003, however, when his mother, Rita, passed away from congestive heart failure and vascular dementia. Watching her slow, physical and cognitive decline as well the struggle of his family and her healthcare providers to deal with the process inspired him to join the hospice movement in 2004.
Since that time, Mike has been on the road working as a hospice advocate. Over the course of that journey, his travels have taken him to countless destinations – clinics, churches, hospitals, nursing homes, assisted living facilities, senior citizen centers, disease specific support groups, and private residences – where he’s talked with literally thousands of people from all walks of life. But, it has been with the dying and their loved ones that his most meaningful and rewarding conversations have taken place. In fact, one of the great lessons he’s learned from terminally ill people is that most are not afraid to die; rather they are afraid of the dying process. Some of the common fears they have are:
•Am I going to suffer?
•Will I be a burden upon my family?
•Will I have to leave my home?
•Will I die alone?
•Will I still get to see my doctor?
•Will I leave unfinished business?
In this documentary film, Mike sees the potential it has to make a difference—both in terms of demystifying the dying experience and encouraging people to begin the conversation about their end-of-life wishes well before the finish line is in sight. Mike currently works as the Director of Community Engagement and Care Partner Relations with Rainbow Hospice Care in Jefferson, Wisconsin. He and his wife, Denise, live in nearby Waukesha along with their two children.
Have a kind and respectful day.