Advance care planning helps to ensure that an individual’s wishes for medical care are followed if they’re unable to communicate with their healthcare providers, but only about a third of American adults have done it.
“Death is a forbidden topic for a lot of people in America" says Dr. Timothy Jordan, a professor of public health at The University of Toledo. "By talking about it or planning for it, we think we’re going to jinx ourselves, but for minorities, there are additional barriers that have prevented them from completing advance care planning.”
In 2017, Jordan and then-UToledo doctoral student Dr. Colette McAfee conducted a nationwide study that examined racial disparities in advance care planning. They found that only 8% of Black respondents and 18% of Hispanic respondents had a living will, durable power of attorney, or had talked with family members and loved ones about their wishes, in contrast to 33% of whites.
Jordan said there are a variety of challenges that contribute to that racial disparity, including poverty, lack of access to a computer, the Internet or a printer, distrust of the healthcare system, language and cultural barriers, and less awareness about the importance of advance care planning and the process by which it can be done.
While the pandemic has created a new urgency for all Americans to complete advance care planning, Jordan said it’s especially critical that public health officials, policymakers and educators work to close that racial gap.
“You don’t have time to plan a COVID-19 death. These deaths are happening quickly. The last time many people see their loved ones is when they walk into the emergency room with them,” he said. “We’ve seen clear racial disparities in who is being most affected by this virus, and those individuals are less likely to have completed advance care planning.”
Data from the U.S. Centers for Disease Control and Prevention show that Hispanic Americans are 4.6 times more likely to be hospitalized with COVID-19 and 1.1 times more likely to die from the virus than whites.
Black Americans are 4.7 times more likely to be hospitalized and 2.1 times more likely to die.
In the first national analysis of racial discrepancies in end-of-life planning, the National Center for Health Statistics reported Jan. 6 that African Americans in home health care and nursing homes were half as likely as whites to have an advance directive such as a living will or a do-not-resuscitate (DNR) order.
Experts say this disparity means African Americans are more likely to endure unwanted medical procedures and experience unnecessary pain and family strife.
"When people don't have advance directives, they are more vulnerable to having decisions made that do not allow for a dignified death," says Etienne Phipps, director of the Center for Urban Health Policy and Research at the Albert Einstein Healthcare Network in Philadelphia. It's also very difficult for families to take on the burden of making decisions at the end of life, says Phipps.
She adds, "It's a lot easier if they feel that the direction of care reflects what the patient wanted."
The Patient Self-Determination Act, passed 21 years ago, requires most health care facilities to talk with patients about their right to come up with an end-of-life plan. That can include discussion of what treatments a patient would want or not want as a way of ensuring that a person's wishes are fulfilled even when they can no longer communicate them.
In all, the report found that 28 percent of home health care patients and 65 percent of nursing home patients had at least one advance directive in place. When race is considered, only 13 percent of blacks in home health care have a plan in place, compared with 32 percent of whites. In the nursing home setting, 35 percent of African Americans have a plan compared with 70 percent of whites.
Experts cite entrenched reasons
Several factors play into the reason African Americans are less likely to have advance directives, according to Sharon Williams, research scientist at the University of North Carolina Center on Aging and Diversity. The formal nature of advance planning — a living will you have to sign, or an ominous sounding do-not-resuscitate document — ignite entrenched fears that doctors won't do everything possible to save a person's life. It also puts into question a person's religious faith, says Williams.
"There's a thought that if we accept the possibility that we're going to die from an illness, then our faith isn't strong enough," says Williams. "People think, 'I have to hold on to my faith. There's no room for me to plan for dying. That's giving up.' "
For advance planning to be successful in the African American community, Williams suggests doctors bring the patient's family into the discussion and encourage the use of medical powers of attorney, which give control over decision making to a loved one, instead of indiscriminately ruling out certain medical procedures. The National Center for Health Statistics study found that living wills and DNR orders are the most commonly used advance directives.
Further, physicians need to be aware of the strong role religion plays in the lives of many African Americans.
"We should respect and acknowledge a person's right to hold out for a miracle," Williams says. "Doctors need to incorporate that possibility into the discussion, but also explain that planning is important in case the miracle isn't the outcome."
What Can You Do to Plan for Healthcare in Retirement?
So, what can you do to plan for healthcare expenses so that they don’t detract too much of your income from your other areas of your lifestyle?Include Healthcare Spending in Your Retirement Financial Plan
First of all, be sure to include forecasts for healthcare spending in your retirement plan. As you saw earlier, many reports and commentaries provide lump-sum estimates for healthcare spending over someone’s retirement lifespan.But in many ways, it’s easier to plan for healthcare as an annual expense. Based on various research sources, once someone hits their mid-70s, their healthcare expenses usually begin to pick up considerably.
Estimating Retirement Income Needs in Your Plan
A rock-solid retirement income plan will have estimated numbers for monthly and annual spending as well as cash-flows. Your financial professional can help you estimate what your health costs might look like on these bases, as well.Liquidity is an important part of your financial strategy for retirement. As one part of your game-plan, you might consider having a dedicated bucket of liquid money for health expenses as they may arise.
Ask your financial professional about this strategy option as well as others.
Explore Other Insured Solutions for Cost Relief
Look into other how other insurance-based solutions can help take health cost burdens off your shoulders.Many insurance solutions exist for risks like long-term care costs, from annuities and advanced life insurance products to asset-based long-term care policies. Your financial professional can help you determine this.
Receive Enhanced Income for Long-Term Care
One possibility is to look at asset-based annuities that can double or triple their payouts if you become incapacitated or need any form of long-term care.While you enjoy this stepped-up income due to your changing health situation, many of these contracts provide this stepped-up income for a certain timespan. Check with your financial professional about the terms and timespans of any annuity contracts like this you may be exploring.
Pay for Care with Tax-Advantaged Proceeds
Another alternative is to buy a life insurance policy that has accelerated benefit riders. What is the benefit of these riders? They can pay you tax-free cash proceeds from the death benefit of the policy if you need long-term care.These policies are becoming increasingly valuable as the cost of long-term care continues to skyrocket. What’s more, long-term care policies are also becoming correspondingly more expensive.
What Is the Upside of These Life Insurance Policies?
Perhaps the greatest advantage that these life insurance policies can offer is the guaranteed payout that they give.If you end up never needing to use any accelerated riders, then you still have the cash value and death benefit to fall back on. It’s therefore impossible to "lose" with these policies.
Plan for Your Financial Confidence in Retirement
Jennifer Lang, a financial services professional at JenniferLangFinancialServices.com works with individuals and small business owners. Her company designs affordable estate planning and long-term care plans and she says "People often make the mistake of thinking that estate planning is expensive is only necessary if you have a wealthy estate. However that isn't true. Whether you are single or married, have children or have aging parents, everybody needs to have a plan in place so that family members know in advance what to do. Our focus lies with making sure family members have the peace of mind of knowing that the bills will be paid and that their family members can face aging with dignity. Although COVID-19 is a present day threat, aging and end-of-life is a certain event. We can help you walk through affordable options and scenarios to see what might make sense for you."To learn more about other options that may be available to help you cover your medical expenses during retirement, visit JenniferLangFinancialServices.com.