Americans’ Views on End-of-Life Care

What really matters to us in our final days? A recent survey on end-of-life care by The Economist and the Kaiser Family Foundation sheds new light on our views in the U.S. I’m sharing some of the highlights with you here, along with ideas for how you may want to incorporate this information into your practice. You might also want to use this content for seminars, community presentations, blog posts and newsletters.

Who Should Bear Financial Responsibility for End-of-Life Care

Almost half of Americans (44%) think individuals and their families should bear the greatest financial responsibility for their care as they age. This includes their health care and long term care. About the same fraction (42%) believe that the government should assume the bulk of this responsibility.

What you can do:  Help clients prepare financially to shoulder this financial burden, especially for long term care, and especially if they don’t want to rely on their family Members for financial assistance.

What Matters Near the End of Life

The most Americans — almost 9 out of 10 — value not burdening their family financially with their care as extremely or very important to them (87%). The other wishes that are highly valued (i.e. extremely or very important) by Americans as they approach their own deaths have to do with their physical, emotional and spiritual care: making sure their medical wishes are followed; having loved ones around them; being comfortable and without pain; making sure their family isn’t burdened by tough decisions about their care; and being at peace spiritually. Notably, living as long as possible was the least important factor surveyed. Under half (46%) said that this was very or extremely important. Here’s the breakdown of what matters most to people at the end of life:

What you can do — beyond simply preparing clients’ advance directives:  

• Help clients think about who would be an appropriate HCPOA for them so that their wishes are most likely to be honored if they need to rely on a surrogate. How? Have a conversation with clients about how to choose an appropriate surrogate.
• Help clients clarify their goals and wishes for the end of their lives. A standard living will does not contain sufficient information to guide a client’s health care agent in meaningful ways. How? There are many tools to offer clients to help them think through (on their own time) what matters to them toward the end of life.

Who Should Make Medical Decisions

The vast majority of Americans (87%) believe that they and their families should be the primary decision makers about their own health care. Only a small minority (8%) think that doctors should have a greater say than patients in decision-making. However, about half (49%) feel that Americans currently do not have enough control over their own medical decisions, and almost two-thirds of Americans in bad health feel this way (63%).
What you can do:

• Urge clients to talk with their HCPOA and other family Members about their wishes — so their surrogates can be better advocates for them. Simply completing an advance directive without having conversations with loved ones is not enough and doesn’t work. In addition, conversing with loved ones solves the problem of not burdening the family with tough medical decisions (a significant value for most people – see the chart above). (In fact, research shows that health care surrogates who have conversations about wishes before the loved one’s death have improved mental health compared to those who didn’t talk.)  How? Give clients homework:  to have a conversation with family Members. You can assign it after the intake meeting, when they come back for a trust funding meeting, or as a reminder contact in 3 or 6 months after the signing. Some of the advance care planning tools I mentioned above are great ways to have conversations with loved ones.
• Ensure that clients’ advance directives are always available so that clients’ wishes can be known when it matters. The availability of advance directives when they are needed is astoundingly low (see my March 2011 post), even in hospitals with electronic health records (see my Jan 2017, May 2016 and June 2016 posts). How? Assign a rotating staff person in your office to be on-call for after-hours access (after all, your firm is only open about 23% of all the hours in a year), or enroll clients in an advance directives registry with 24/7/365 service.

What Matters at Death: 7 in 10

Thinking about how to die, seven in ten Americans (71%) prioritize “helping people die without pain, discomfort and stress” over “preventing death and extending life as long as possible.”  Many fewer Americans – only two in ten (19%) –prioritize extending life over comfortable dying. Thinking about where to die, seven in ten Americans (71%) prefer to die at home. Only four in ten, however, believe they are likely to do so. And in reality, only about 2 in 10 Americans currently die in their own home.

What you can do to help honor their wishes: See above.

Patients and Doctors Aren’t Talking

Conversations with doctors about health care wishes just aren’t happening. The vast majority of Americans (89% — almost nine in ten) have not talked with their doctor about their health care wishes. That’s 1 in 11 people. Even among seniors over 65, only 22% have talked to their doctor. Clearly, this is a real problem. On the flip side, two-thirds (66%) say they’re very comfortable talking to their doctor, and 92% are at least somewhat comfortable. So what’s the holdup? It may simply be that people are waiting for their doctors to bring it up.

What you can do:

• Ensure that a client’s primary care physician has a copy of your clients’ advance directives. This will encourage him/her to have a conversation with your client. How? You can remind your client to give a copy to their doctor, but odds are it won’t happen. The most responsible move is to send or fax a copy of the advance directive to your client’s primary physician (with your client’s permission, of course). If you’re working with a good advance directives registry, they can send the documents for you. Many physicians will thank you for this nudge to have a conversation, because most physicians are still uncomfortable bringing up this topic with patients. And now physicians can even bill Medicare for advance directive conversations with patients, so they are even more likely to do it. Need I say that this is also a potential marketing opportunity for your firm?

Randi J. Siegel, MBA, is the President of DocuBank® (docubank.com), which ensures that the emergency information and healthcare directives of its 250,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives. She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly. Randi is an ongoing contributor to the Academy blog.

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