Insights from research by Hugh Magill, Executive Vice President and Chief Fiduciary Officer at Northern Trust.
To fulfill your intentions and alleviate the burden on your family, communicate your care preferences.
Undoubtedly, one of the greatest challenges facing modern families today is end-of-life care. People continue to live longer, the fertility rate continues to decline1 and elders are increasingly living and dying with Alzheimer’s and other forms of dementia. As a result, greater responsibility is being placed in the hands of fewer younger family members.
Despite the prevalence of these trends, many families remain ill-prepared. For instance, more than 40% of respondents in a widely cited health and retirement study2 indicated they have no will, and only 35% of those surveyed in another study had written down their preferences for end-of-life treatment.3
Old Age Dependency continues to climb4
The elderly are increasingly living and dying with dementia
Between 2000 and 2015 deaths from heart disease decreased 11% while deaths from Alzheimer’s increased 123%.
1 in 3 seniors dies with Alzheimer’s or another form of dementia, killing more than breast cancer and prostate cancer combined.
5.7 million Americans are living with Alzheimer’s. By 2050, this number is projected to rise to nearly 14 million. This number includes an estimated 5.5 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer's.
The lack of planning for end-of-life decisions can have a number of emotional and financial consequences for patients and their families. But two stand out:
Preferences for end-of-life care are not fulfilled.
According to Pew Charitable Trusts, while 70% of Americans express the desire to die at home, only 30% actually do, with the rest dying in the hospital or at a skilled nursing facility.5 According to another study by the Kaiser Family Foundation, while 71% of Americans want to die at home, only 40% think this will actually happen.6
Family relationships suffer.
Research indicates that end-of-life care decisions draw many families into interpersonal conflict. For example, a study of spouses and adult children of patients with lung cancer found that nearly 30% of families disagreed or argued at the end of life.7 Rising geographic, religious and cultural diversity within families is likely exacerbating this issue.
While successfully navigating these issues requires a multi-faceted approach, solutions rest largely on communication – both in written and verbal form.
A plan for end of life care
Carefully consider and identify your end-of-life care preferences as soon as possible.
Medical emergencies can occur at any age. Yet in a survey conducted by the Pew Research Center, only 26% and 38% of people aged 18-49 and 50-64, respectively, indicated they have written down or talked with someone about their wishes.8
To begin this process, work with medical and legal advisors who have demonstrated an openness and ability to guide you through the types of decisions that may arise as you age or face a health crisis. Then carefully consider your preferences. This is a weighty task that requires you to assess your values and priorities, but making these decisions sooner rather than later will likely give you greater peace of mind.
Examples of the types of scenarios you will want to consider include the following:9
- What is the right balance between extending life and quality of life for you?
- What if an illness or accident left you paralyzed or in a permanent coma? Would you choose to receive life sustaining treatment?
- Would you be willing to receive powerful pain medications at end-of-life, even if they carry significant adverse side effects?
- What if you are permanently unconscious and develop pneumonia? Would you want to receive antibiotics or be placed on a ventilator?
Prepare advance directives with the help of your advisors.
There are a number of documents pertaining to end-of-life care that you may want to consider preparing with your advisors to facilitate a clear understanding of your preferences. While most people are familiar with a living will – one form of an advance directive – many others exist and have varying usefulness and applicability depending on state law and your unique situation. The most important directive is a durable power of attorney for health care, which specifies whom you would like to make decisions for you when you are unable to do so. Other forms of advance directives include the following:
- A DNR (do not resuscitate) order instructs medical professionals to refrain from attempting to return your heart to a normal rhythm, using CPR or other life-support measures, if it stops.
- A DNI (do not intubate) tells medical staff you do not want to be placed on a breathing machine.
- A non-hospital DNR communicates your wishes regarding your heartbeat or breathing if you are not in a hospital.
In addition to the above, an increasing number of states recognize POLST (Physician Orders for Life-Sustaining Treatment) and MOLST (Medical Orders for Life-Sustaining Treatment) forms, which provide guidance regarding your medical care preferences in an enforceable physician’s order. These are typically prepared near the end of life or when you become critically ill.
Carefully incorporate your end-of-life wishes into your estate planning documents.
Once you have decided and memorialized your advance directives, make sure your estate planning documents align well with those choices, as well as your preferences for care settings. For example, will successor trustees be able to make the necessary distributions to cover the relevant costs? Nursing home care costs range on average from approximately $23,000 to more than $500,000 per year, and the differences in cost between nursing homes and home health care aides can be in the hundreds of thousands.10 Also, out-of-pocket medical expenses at end-of-life can be very substantial, depending in part, on your care preferences.
Discuss your end-of-life preferences with your family while you still can.
Unclear or nonexistent medical directives place considerable burden on family members during periods of heightened emotional distress. In addition to preparing your advance directives, communicate your wishes early and openly, no matter how uncomfortable or premature these discussions might seem. Not only will such conversations facilitate critical decisions in a time of crisis, they can also accomplish many things written documents cannot. These include conveying the meaning, values and emotions underpinning your choices.
Thoroughly circulate and store your advance directives.
Provide copies of your advance directives to important stakeholders, including your doctor, hospital, family members and health care proxies (i.e., those authorized to make health care decisions on your behalf). This may seem like a minor detail, but it can ensure smooth and uncontentious execution of your instructions during an extremely difficult time for your family.
Periodically revisit your advance directives.
Time and life events can impact your preferences in unforeseen ways. For example, a serious diagnosis may cause you to make additional or different decisions about your care, or a marriage or divorce may require you to change your health care proxy. To ensure you address such changes, revisit your instructions regularly as a matter of practice, and communicate them as thoroughly as when you prepared the originals.
Encourage other family members to take the same steps.
Sometimes your parents or other family members need prompting. This might seem even more difficult than determining and communicating your own preferences, but the results can be invaluable. Knowing your loved one’s wishes and ensuring that they are appropriately memorialized alleviates undue burden on you and other family members.
La Crosse, Wisconsin – A model for success
While end-of-life planning remains a critical issue across the U.S., one city has found a successful model for addressing it. La Crosse Wisconsin is a city of approximately 52,00011 located on the Mississippi River. According to a 2007-2008 study, 90% of adult residents who died in any setting of care had advance directives. Further, 99% of these plans were available in the decedents’ medical records, and 99% of treatments were consistent with them.12 These are remarkable statistics, particularly when compared to national averages. In a study performed by the U.S. Centers for Disease Control and Prevention (CDC), only 28% of home care patients and 65% of nursing home residents had advance directives.13
Groundwork for these results began nearly 30 years ago with a medical ethicist, Bernard “Bud” Hammes, who continually observed the moral and emotional distress suffered by families needing to make end-of-life decisions for their loved ones. To tackle this issue, he partnered with Gundersen Health System, one of two hospital networks in La Crosse, and other local health organizations to pilot a program now called Respecting Choices ®. This program focuses on facilitating communication between medical professionals and family members, making advance care planning available to every person, and ensuring plans are available to and properly executed by medical professionals.
Today, this program has gained international recognition and has been adopted by health care systems across the world, including in multiple states and in Australia, Canada and Singapore. It also serves as an example for individuals and families of the powerful results open communication and health care planning can have.
To read more about this program, visit https://respectingchoices.org/.
- The World Bank. Fertility rate, total (births per woman) as of 2016.
- Drawn from the Health and Retirement Study – a project sponsored by the National Institute on Aging and the Social Security Administration and conducted by the Survey Research Center at the University of Michigan’s Institute for Social Research.
- United Nations, Department of Economic and Social Affairs. The 2017 Revision of World Population Prospects. The 2030 forecast is the momentum variant, which assumes instant-replacement-fertility, constant-mortality and zero-migration.
- Pew Charitable Trusts, sourced from the Center to Advance Palliative Care as of 2013. Palliative Care and End-of-Life Care: Improving Personal-Centered Care for Patients with Serious Illness – Appendix.
- Kramer, B, Kavanaugh, M, Trentham-Dietz, A, Walsh, M, Yonker, J. (2010). Predictors of Family Conflict at the End of Life: The Experiences of Spouses and Adult Children of Persons with Lung Cancer. The Gerontologist, Volume 50, Issue 2, Pages 215-225. https://doi.org/10.1093/geront/gnp121.
- U.S. Department of Health and Human Services. Advance Care Planning: Tips from the National Institute on Aging. January 2018.
- Genworth: 2017 Cost of Care, as measured by the range between minimum and maximum average costs across the United States of home health aides and private rooms in nursing homes.
- United States Census Bureau. QuickFact, La Crosse city, Wisconsin. Population estimates, July 1, 2017.
- https://www.cdc.gov/nchs/data/databriefs/db54.pdf. Use of Advance Directives in Long-term Care Populations, as sourced from a CDC/NCHS National Nursing Home Survey in 2004 and National Home and Hospice Care Survey in 2007.