Research shows Americans more likely to talk to kids about drugs, sex than discuss terminal illness with parents
Arlington, VA – Baby Boomers and their elderly parents are experiencing a communications breakdown when it comes to discussing death. Adult Americans are uncomfortable talking about death and reluctant to ask about their parent’s final wishes, according to new research released today by the National Hospice Foundation.
The research shows that Americans are more likely to talk to their children about safe sex and drugs than to their terminally ill parents about choices in care as they near life’s final stages. One out of four Americans over the age of 45 say they would not bring up issues related to their parent’s death – even if the parent had a terminal illness and less than six months to live.
“When we avoid candid discussions, we sacrifice knowing the final wishes of our parents and very close friends,” said Karen A. Davie, president of the National Hospice Foundation and National Hospice Organization. “It’s time we started talking.”
The research shows that Americans expect their loved ones to carry out their wishes about end-of-life care, but have not made these wishes clearly known. One out of every two Americans overwhelmingly say they would rely on family and friends to carry out their wishes, but 75 percent of Americans have never taken the time to clearly articulate how they wish to be cared for during life’s final journey.
“As difficult as it seems, we must talk with our parents, spouses and very close friends about options like hospice that provide physical and emotional support to terminally ill patients and their families,” said Davie. “If we don’t have these discussions, there is no way that thoughts can be known or respected. By sharing our wishes about end of life, we remove a heavy burden from our family and friends who will not have to wonder if they are doing the right thing.”
Although Americans are averse to discussing end-of-life issues, the study found Americans are clear about what they want if faced with a terminal illness. The research showed that Americans’ top priorities were having a choice about services available, emotional and spiritual support for patients and families, pain control tailored to the patient’s wishes, and the option of the patient to die in his or her own home or a family member’s home.
Currently, there are nearly 40 million senior citizens in the United States – but in the next 30 years that number is expected to double to 80 million as Baby Boomers and their parents reach age 65. Each year, more than 70 percent of the 2.3 million people who die in America are faced with tough decisions on end-of-life care.
The research also shows that despite ongoing improvements in end-of-life care over the last two decades – with terminally ill patients living longer and more comfortably – almost one-third of Americans admit having no idea whom they would contact to get the best care if a family member or close friend had a terminal illness and less than six months to live.
“The entire topic of how we want to be cared for when we are dying makes us uncomfortable. It’s difficult for us to even think about having that conversation, and that’s a problem. We must familiarize ourselves with options now in order to make the best decisions later,” said Stuart Lazarus, chairman of the board of the National Hospice Foundation. “Despite the fact that hospice care has been successful in America for more than two decades, one-third of Americans do not know that only hospice offers what people say they want at the end of life: choice in care; control of pain; medical attention; help for the family; spiritual and emotional support; and the option to remain in their own home.”
Worries about pain and money also cloud discussions about end-of-life care. “It is sad and unnecessary that people worry about pain at the last stage of life when effective pain control is so central to the end-of-life experience today. And 90 percent of Americans don’t realize that hospice care is a free benefit provided to government Medicare beneficiaries,” Davie said.
To help people initiate discussions with their parents and loved ones, the National Hospice Foundation has developed points to consider when talking about care during life’s last stages, available on the organization’s website, www.nho.org.
The National Hospice Foundation commissioned the research – conducted with nationwide focus groups throughout the country this Spring, followed by a national telephone survey concluding April 20 – to better understand Americans’ beliefs, concerns and understanding about care during life’s final stages. The National Hospice Organization can help people learn more about hospice services available in their community.
Call the Hospice Helpline at (800) 658-8898.
RESEARCH SUMMARY AND STATISTICS AVAILABLE AT: www.nho.org
National Hospice Foundation
EXECUTIVE SUMMARY
There are nearly 40 million senior citizens in the United States. But in the next 30 years, that number is expected to double to 80 million as Baby Boomers and their parents reach age 65. And each year, one-third of the people that die suffer from a chronic illness. For every one of these deaths, there is a patient and a family faced with difficult decisions about care at the last stage of life.
To better understand how Americans make decisions about care during the last stage of life, the National Hospice Foundation, Arlington, Va., commissioned qualitative and quantitative consumer research. T.Baugh and Company, Washington, D.C., and International Communications Research conducted the research.
The research involved a national survey of Americans 45 years of age and older and was conducted April 9-20, 1999. This age group was considered pivotal to understanding how people talk about care during the last stage of life, because it includes much of the sandwich generation who face care decisions for their aging parents – as well as for themselves – all while parenting their own children.
Key Findings
More than one out of every four American adults are not likely to discuss with their parents issues related to their parent’s death, even if the parent was terminally ill and had less than six months to live. Americans are more likely to talk to their children about such sensitive topics as drugs and safe sex.
Fewer than 25% of Americans have thought about how they’d like to be cared for at the end of life and put it in writing. While 36% say they have told someone about how they would like to be cared for, focus groups show that people often view a passing comment about how they would like to die as informing their loved one of their wishes.
Even though Americans are not talking about how they want to be cared for during the last stage of life, one out of every two Americans overwhelmingly state that they will rely on family and friends to make decisions about care at the end of life.
At the same time, Americans say that making sure that the patient’s own wishes are enforced at the end of life is the most important service available for a loved one who is sick with less than six months to live.
About one-third of Americans are unsure about whom to contact about getting the best care during life’s last stages. 30% said they would contact their doctor, 13% mentioned hospice and 11% mentioned their family. But nearly one-third said they did not know whom they would contact.
More than 90 percent of Americans do not know that hospice care is a fully covered Medicare benefit for patients at the end of life and includes all that Americans say they want for their loved ones – including pain management and emotional support.
Clearly, the research shows a communications challenge when it comes to Americans talking about care during the last stage of life. Americans expect their loved ones to carry out their wishes (and value this as the most important thing they can do), yet many are not letting their wishes be clearly known. This lack of communication can create a tremendous emotional burden on family members who wonder if they are “doing the right thing” for their loved one.
The National Hospice Foundation (NHF) is providing information to enable people to better initiate important discussions about care during the last stage of life. NHF wants to make it easier for Americans to hold important discussions about end-of-life care now – before they are necessary – to help families discuss issues in a calm, informed and thoughtful manner.
NHF has developed discussion points to help start the conversation about end-of-life care with a loved one. The information is available through the National Hospice Organization website, www.nho.org.
National Hospice Foundation – Statistical Summary
AMERICANS AND TALKING WITH THEIR CHILDREN AND PARENTS ‘
Not Likely to Bring Up Drug Use With Child 7%
Not Likely to Bring Up Safe Sex With Child 18%
Not Likely to Bring Up Impending Death With Parents, Even If They Were Terminally Ill With Less Than Six Months To Live 28%
IF YOU WERE GOING TO MAKE A DECISION ABOUT OBTAINING CARE FOR A TERMINALLY ILL PERSON, WHOM WOULD YOU RELY ON TO HELP YOU MAKE THAT DECISION?
Family/Friend/Neighbor 50%
Doctor 25%
Other/Refused 13%
Don’t Know 8%
Clergy/Church member 4%
HAVE YOU THOUGHT ABOUT HOW YOU WANT TO BE CARED FOR AT THE END OF LIFE?
Have thought about it and told someone. This number can be misleading as focus group findings show these “discussions” are often casual and comments are made in a fleeting, informal manner 36%
Haven’t thought about it and/or haven’t told anyone 35%
Have thought about it and put it in writing 24%
Don’t Know/Refused 5%
IF A FAMILY MEMBER OR VERY CLOSE FRIEND HAD A TERMINAL ILLNESS AND PROBABLY HAD SIX MONTHS OR LESS TO LIVE, WHOM WOULD YOU CONTACT TO GET THE BEST CARE?
Doctor 30%
Don’t Know 26%
Hospice 13%
Family/Friends/Neighbors 12%
Hospital 7%
Social Service/Charitable Organization/Church 3%
Nursing Home 2%
Visiting or Home Nurses 2%
HMO 1%
Other/Refused 4%
HOW IS HOSPICE CARE PAID FOR?
Don’t Know 44%
Insurance 20%
Charitable contribution 14%
Medicare/Government 9%
Other/Refused 6%
By the patient and family (out-of-pocket) 5%
Free 2%
IN ORDER, HERE ARE THE TOP 10 SERVICES THAT AMERICANS FEEL ARE MOST IMPORTANT FOR A LOVED ONE
WHO IS SICK WITH LESS THAN SIX MONTHS TO LIVE:
Someone to be sure that the patient’s wishes are enforced
Choice among the types of services the patient could receive
Pain control tailored to the patient’s wishes
Emotional support for the patient and family
An opportunity for the patient to put his/her life in order
Spiritual support for the patient and family
Hospice care provided no matter where the patient is living
A team of professionals, like physicians, nurses and counselors, to care for the patient The patient’s ability to be cared for and die in his/her own home or a family member’s home
Continuity with the same caregivers, no matter where the patient is staying
5 POINTS TO CONSIDER WHEN INITIATING DISCUSSIONS ABOUT END-OF-LIFE CARE
Choose the Setting.
Find a quiet, comfortable place free from distraction to hold a one-on-one discussion. A loved one usually wants to share his or her wishes in a private setting. And plan for the conversation – this is not a discussion to have on the spur of the moment.
Ask Permission.
People cope with end-of-life issues in many ways. Asking permission to discuss this topic assures your loved one that you will respect his or her wishes and honor them. [Some ways of doing this could be: “I’d like to talk about how you would like to be cared for if you got really sick. Is that OK?” or “If you ever got really sick I would be afraid of not knowing the kind of care you would like. Could we talk about this now? I’d feel better if we did.”]
Talk About It.
You have initiated this conversation because you love this person. Focus on your desire to help him or her maintain a full and happy life, even during difficult times Use a warm and caring manner. Allow your loved one to set the pace, and use nonverbal communication to offer support. [Some ways of doing this could be by nodding your head in agreement, holding your loved one’s hand, or reaching out to offer a hug or comforting touch.
Be a Listener.
This is not a debate. Sometimes just having someone to talk to is a big help. Be sure to hear what the person is saying. Listen for the wants or needs that your loved one expresses. Show empathy and respect by addressing these wants and needs in a truthful and open way.
Do Your Homework.
Before initiating the discussion, learn more about the kinds of end-of-life care options available in your community. Become familiar with what these options offer – especially so that you can determine if these options will meet your loved one’s end-of-life needs.
Doing your homework helps ensure that you will know whom to contact to meet your loved one’s wishes.
Questions to ask your loved one about his or her end-of-life care:
Would you like choice in care at the end of life?
Would you like to spend your final days at home or in a home-like setting?
Do you feel it’s important to have medical attention and pain control tailored to fit your needs?
Do you feel it’s important for you – and your family – to have emotional and spiritual support?
If your loved one responds “Yes” in answer to these questions, he or she wants the kind of end-of-life care that hospice provides. For more information, call the hospice in your local community. You can use The National Hospice Organization resources listed below to locate the hospice nearest to you.
