Poll Finds Wide Gap Between the Care Patients Want and Receive at End of Life

Few older Californians discuss treatment preferences with their doctors

When it comes to how they want to spend their final days, Californians would 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 Health Care 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 say that if 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. 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 Health Care 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 physicians, 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 medical providers. These numbers drop to 26% for those whose loved ones experienced a language barrier and 25% for those 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 say their home is their preferred place of death, but only 32% passed away in their homes, according to death records data 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, the 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 say 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 say they would want a seriously ill loved one to complete the form so they could 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.

More Online

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 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 details about their palliative care programs.

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.

Contact Information:
Steven Birenbaum

About the California Health Care Foundation

The California Health Care Foundation is dedicated to advancing meaningful, measurable improvements in the way the health care delivery system provides care to the people of California, particularly those with low incomes and those whose needs are not well served by the status quo. We work to ensure that people have access to the care they need, when they need it, at a price they can afford.